Pretentious art & book loving lowlife (mental patient)

Tag: Anxiety

Enough of this lolling about, I need to organise my psychosis, shape up and get with the programme.

In March 2017 I experienced a six-week episode of improved motivation. For several years until then I had been subject to such a degree of Schizoaffective-induced lack of interest and anhedonia that I rarely left my flat. I’m frequently the same again now.

This window of desire and inclination coincided with me receiving therapy.

I am fortunate that I live in the South of the Royal Borough of Kensington and Chelsea. Regarding service provision, it is arguably the best place to be a mental patient in Britain. I have had extended periods of psychological intervention and haven’t just been fobbed-off with the usual short course of cognitive behavioural therapy (CBT): 12 weeks, or ten weeks, or 6 weeks, or twenty minutes. Dr Jay Watts (Shrink at Largeon Twitter) has written that GPs in East London are being trained to administer 10-minute slices of CBT. It’s so miraculous that just a short burst of it with a family doctor and you’ll be as ripe as ninepence. It can cure everything from the blues to boredom to baldness.

Understandably, the Department of Work & Pensions (DWP) are very keen on CBT. Mind doctors will be present wherever poor people gather – in health centres, in Greggs, down the bookies – ready to dispense work-related mercies and performance-enhancing kindness. Psychologists will be placed on every street corner as a precaution, available to spot any behaviour that can be used to diagnose a person as “fit-for-work”.

On the Psychotic & proud page, I refer to Therapy Types. I use this vague classification as I’m not clear what sort of therapy/counselling I received. I’m not convinced the therapists/counsellors were entirely sure what that they were administrating. It goes to the heart of the problem. How do you deal with someone who turns up one day engaged and reasonably articulate and the next day is all but mute and can’t make eye contact? Added to that is my need to cancel things at short notice because I believe people are trying to control my thoughts using a force called sonic or I’m going through a hefty session of visual hallucinations and don’t want to leave the house.

There seemed to be a constant ebb and flow of optimism as to what could be achieved, but in my most recent course of therapy, we settled on dealing with some of the most elemental problems resulting from my Schizoaffective-induced lack of get-up-and-go. I think the therapist started out with loftier ambitions but was a realist. I’m pointing this out as there are more militant Therapy Types out there who’ll want people in catatonic states to talk about their childhood, while others dismiss Anorexics who refuse to eat a burger and chips as being unwilling to engage with the process and beyond help.

We talked about me setting goals, a set of ambitions and daily destinations. I wondered if my having targets might be pitching it a bit high. We spoke about objectives and missions but settled on aspirations because for most of the time I can’t do more than just hope to achieve things. Even the most modest tasks can be distant dreams.

It took several weeks, but we managed to distil my bashful yearnings down to a prudent list.

Eight months later and I’ve edged slowly forward. It now contains broad areas combined with micromanagement.

I have some hours of the day allocated to “activity”. This includes the voluntary work I do, learning new things and creative endeavours such as writing this blog. There’s time set aside each day for reading and another block of time earmarked for art gallery visits.

The micromanagement would be better described as nano-management: I have reminders to record how much gas and electric I use each week, to check the carbon monoxide alarm and even to put a note next to the kettle on Thursday night to make sure I don’t forget to weigh myself on Friday mornings. I aspire to cut my toenails on Tuesday evenings.

My aspirations are in a Microsoft Word document called typicalweek.doc. I resave a copy of every Tuesday evening and plan my aspirations for the coming week, with my week beginning on Thursday as I get my Employment and Support Allowance (ESA) every other Thursday and that’s the day of the week that my care worker/cleaner comes.

You’ll be thinking this sounds amazing and that I must get so much done. That’s not how things pan out.

I have an idealised version of my life where I undertake a few light hours of activity in the morning – say, voluntary work – visit an art gallery in the afternoon, and come home and do some reading in the evening. In reality, I go for days or sometimes weeks at a time when if I manage to take my medication, brush my teeth and change my underpants I consider myself a high achiever.

No voluntary work gets done most weeks, and I had to publish the “Schizosomething is Unwell” post to explain the lack of updates on this site, and I have been nowhere near a gallery for more than a month now (the aim is to visit one three times a week).

Why?

The Sonic Phenomenon continues to dominate my life. For at least a third of the week, I struggle with the idea that people are trying to insert a force called sonic into my head and that they are trying to control my thoughts. This can often take up the whole of the week. At a low level, it can go on for weeks at a time. I have to consider myself lucky that overall I retain a fair degree of insight.

The Sonic Phenomenon is closely linked to motivation. You could set flat on fire, and I’d still lie in bed, and I procrastinate to an unfathomable degree. I thought I was becoming very ill again at the start of November 2017 as I kept saying to myself. “I’ll feed Schizo in ten minutes… I’ll feed Schizo in ten minutes”. Poor cat went unfed for a long time. Recovery in the binon Twitter advised me to get an automatic cat feeder.

I don’t like leaving the flat during one of my hallucination jam sessions. It’s not that I find these frightening – I know that some people experience terrifying visual hallucinations – I just have a sense of wariness of being around people. They can tell that I’m not in the present and that I’m mentally otherwise engaged.

Then there is my anxiety.

I saw my Community Psychiatric Nurse (CPN) a few weeks ago and told him I never experienced anxiety like this before, though I speculated that I may have been too busy being mental in other ways to notice. Now when I leave home, I experience soaring dread. I feel jumpy and hypervigilant and constantly look around. I think I attract attention to myself as a result. For several weeks I haven’t felt equal to running the gauntlet of the motley collection of misfits who guard our palaces of art, especially the oddballs at the Victoria & Albert Museum (V&A).

In the street, on the tube and walking around Tesco I am terrified to make eye contact. I momentarily caught someone’s gaze while sitting in the local Tesco cafe. I thought they gave me a sour look. It was only when I glanced back at them that I realised it was their countenance. They just had one of those faces. Often I don’t spot these things and instead return to my digs thinking the world hates me.

Talking aloud in public and at home continues to be a problem. Outdoors, naturally, this attracts attention.

The only good news in all this is that I am reading more. For the first time in my life, I have a reading list in preference to ambling along from one book to another. It’s full of things I think I should have read (mostly fiction). It’s in a Word document, and I would put it here to download, but I’m too embarrassed for it to be publically known that I have such huge gaps in my fancy book learning.

There is a long-term quest. Apart from the weekly prompting to check my carbon monoxide alarm, my aspirations are primarily geared towards acquiring the skills required for greater self-expression. The learning aspect of the activity I described above includes web design stuff, making videos/podcasts and general digital tomfoolery. It will allow me to develop more of a voice. I bought a copy of Grammar for Writers to help me on my journey.

If I ever become well enough to think about paid work, maybe I will be able to go back to web design. If I end up washing dishes, at least I’ll have some sort of intellectual outlet to stop me going even more mental than I am already.

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“Schizosomething is Unwell” is a play on “Jeffery Bernard is Unwell” the statement which famously appeared when Jeffery Bernard was unable to produce his weekly column for The Spectator Magazine: unwell being a euphemism for worse the wear for drink, or downright drunk.

Bernard was a literary legend of London’s Soho who fraternized with the likes of Dylan Thomas, Nina Hamnett, Francis Bacon and other bohemians but was almost as well known for his feckless, chaotic lifestyle and inability to stay sober.

My lifestyle may be shambolic, but I am, however, sober. Haven’t touched a drop of alcohol since December 2016. I didn’t have a drink problem. I had a fat bastard problem. I needed to lose weight.

If you’re reading this, it means I have been unable to meet the demands of a “punishing” schedule producing 500-750 words a fortnight. I’m unwell with the Schizoaffective-induced lack of motivation I experience or one of the other symptoms that make my life such jolly japes.

There’s no need to send a get well soon email or leave a comment with a similar thought.

What am I doing? Probably lolling about half-heartedly listening to music or trying to read. I might still be up to playing with my accounts on Twitter or Instagram. At the very least I should be able to play with my cat, Schizo. If you’re reading this in Summer, I might be in St James’s Park.

This page will be posted whenever I don’t manage to write something new once a fortnight. Hopefully not very often. It will serve as a reminder for you to look at some previously published content – a shrewd editorial move – and I’m praying I’ll get it together enough to add some links to things elsewhere on the web to keep you entertained in my absence.

Obviously, you’ll wonder how I managed to produce this post. I worked on it for six months and just about had the wherewithal to (re)publish it now.

On Schizosomething:

Psychotic & proud: If you fancy a longer read, try this page. It includes my symptoms, medication, relationship with The Staff, my brilliant career and adventures in homelessness.

Elsewhere:

Patti Smith: This interview was undertaken by New York Public Library (NYPL) in 2010. She talks about youth, friendships and the artists and authors who inspired her. She sounds like an awestruck teen. She turned 71 in December 2017.

BBC Radio 3: Composer of the Week. Yes, I know this classical music show has been around since the stone age, and the podcast has probably been running since Queen Victoria came to the throne, but what can I say, I’m a late-developer, and I’m only just now getting into podcasts. It started as I can barely bring myself to watch television anymore. How does anyone? There are an impressive array of podcasts on BBC Radio 3 and BBC Radio 4. Sadly, some can only be accessed in the UK.

The plan is to listen to Composer of the Week on Friday evening, and if I’m well enough, travel to Kensington Central Library on Saturday and collect some related CDs to listen to throughout the week. Only 40p each for poor old schizos and other disabled.

Madonna: Take a look at her Instagram account. No really. Now she’s not trying to look 25 all the time (she’s 59) her output is getting interesting again.

Alexa Chung: A young lovely I follow on Instagram (she’s 34, that’s not too bad for a 52-year-old to take an interest in and between 2002 and 2006 she lived with the photographer David Titlow who is twenty years her senior). I know there are gallons and gallons of stuff like this an Instagram, but I thought this was an exceptionally good example of the genre. Turn the volume up loud.

Featured image

It was the famed drinking den of Jeffery Bernard, as well as being the regular hangout of the staff of Private Eye. It is still is a Soho institution.

When I slept on the streets I spent most of my days sitting on the pavement outside it. Some building site workers from Old Compton Street befriended me and used to buy me bacon rolls from a nearby cafe in the mornings and pints of Guinness from the Coach & Horses in the evenings.

I thought there was a painting of Jeffery on the NPG site, but I can’t find it. However, I think it’s the same painting used on the cover of Just the One: The Wives and Times of Jeffrey Bernard 1932-1997. I’ve read this biography and agree with a reviewer who described it as spiteful. That said, overall it was a good read: you can get it from Amazon (but unfortunately not on Hive).

Finally, the column Jeffery Bernard is Unwell was adapted for the stage by the writer and journalist Kieth Waterhouse. It was originally staged in 1989 starring Peter O’Toole. There’s was a rapturous review in the Evening Standard for the 1999 revival.

Seeing people in Tesco the day after Boxing Day they looked more like they had escaped a hostage situation rather than come from a family gathering. I swear, sometimes being unsocial is the best option.

You won’t be surprised to know that I will be spending New Year’s Eve alone with my cat, Schizo.

In the past, I have done the party thing. For years I went to Trafalgar Square. It was tolerable until they banned alcohol, but it still had the air of contrived revelry, strained jollification, and an unrealistic expectation of having a good time. A lot of faces in the crowd looked glum, and it used to confirm my belief that I’m right to want to live my life on the fringe, in the margins and away from the fray.

Don’t get me started on fireworks.

Earlier this evening I saw Hong Kong welcome in the New Year with the wretched things. It will be the same all around the globe. Until I came to my senses, for a number years I went to the Thames to watch the display. Talk about tedious; my main memory is of being desperate for a pee. At least in Trafalgar Square you can have a wee in the fountains. It’s traditional.

So I’m my usual misanthropic, distrustful self. I don’t go out of my way to be like this; it’s my default setting.

Still, Happy New Year. I hope you have a good 2018. But don’t get your hopes up.

The next post will be called Aspirations. It will cover my plans to organise my psychosis, shape-up and get with the programme.

Why not follow me on Twitter to find out when this is published or subscribe to this blog by email (box to the left)?

Featured image: Fortnum & Mason window. There are some behind the scenes photos of the making of their Christmas window display. The photo was taken with my iPhone, December 2017.

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Welcome to my home, a council bedsit. Before we commence the pity party I should point out that it’s in a beautiful, quiet tree-lined street in one of London’s more swanky neighbourhoods. Not too bad a place for a middle-aged mental patient to end up. You can take a mooch around my room by scrolling to the photo gallery below.

Parliament’s Work & Pensions Committee is undertaking an inquiry into assessments for two key benefits for disabled people: Personal Independence Payment (PIP) and Employment & Support Allowance (ESA). Though the submission deadline is now passed, you can read submissions made via the web forum as well as longer written submissions.

This was my written submission regarding a PIP assessment. I think it’s definitely worthwhile reading (especially if you’re not familiar with benefit assessments), but this isn’t the most thrilling blog post I have yet produced. You could try the Psychotic & proud page (though that’s a long read) or Creative accounting which goes some way to explaining my obsession with those bastards at the Victoria & Albert Museum (V&A).

My benefit claims are centred around the fact that due to a variety of psychotic symptoms I spend 90% of my time in my room.

I have Schizoaffective Disorder and Obsessive Compulsive Disorder. I have chronic treatment-resistant psychosis that includes visual hallucinations, thought broadcast (the belief that people are listening to my thoughts) and thought insertion (the belief that people are trying to insert thoughts into my head). I have a severe lack of motivation identified as a negative symptom of schizophrenia. I talk aloud – including while in public – often not fully comprehending that I’m doing so. My consultant psychiatrist has told me that I’m one of the most seriously ill people being treated by the community mental health team (CMHT). I frequently lose two-thirds of the week or more to being psychotic.

Please note that it took me a number of weeks to write this submission and I produced it between episodes of severe psychosis. I have to stress this as, like any number of people who are on benefits, I face having benefits removed if it appears I’m not in a persistent vegetative state. Even though I can use a computer I still have very high support needs, in much the same way a former electrician with psychosis could still be eligible for PIP/ESA if they can change a lightbulb.

Executive summary

My assessor for PIP from Atos Healthcare was a nurse who appeared to have little or no knowledge of Obsessive Compulsive Disorder (OCD). It beggars belief that someone could be assessing peoples mental health support needs when they are not familiar with the basic details of one of the most common mental illnesses.

My assessor’s report included distortions and inaccuracies about my illness. It failed to accurately report what medication I take along with side-effects. These weren’t just a clerical errors, they show a failure to investigate why I need PIP, how my illness impacts on my life, the support I need etc.

The process of applying and attending the assessment made me very ill. Despite claiming to undertake a mental state examination the assessor failed to spot that I was deeply psychotic while sitting right in front of her.

The whole PIP application process is designed to deny you benefits rather than to try to establish what support you need to live independently and cover the extra cost of disability.

Mandatory reconsiderations have been introduced as a further hurdle to receiving PIP rather than a genuine attempt to reexamine your claim. The lengthy appeals process will put people off appealing.

Recommendations

Assessments for benefits should be based on expert knowledge by an applicant’s GP and specialists involved in their treatment and care – not reports by private contractors.

The mandatory reconsideration stage should be scrapped and the appeals process simplified and shortened.

With reform Personal Independence Payment (PIP) could be a means of promoting independence for individuals with disabilities/serious illness and should be recognised as a potentially effective means of reducing health and social care costs – ie. for people with serious mental health conditions reducing hospital admissions, the time needed with specialist staff.

An investigation should be launched into Atos Healthcare’s use of the term “mental state examination”. They appear to be fraudulently using a medical term to describe an informal process of gathering information.

Detailed evidence

I was assessed by Atos Healthcare for the change from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) on 26 January 2017. I am aware that Atos have subsequently changed their name to Independent Assessment Services, but I’m continuing to call them Atos on the basis that absolutely everybody else does.

I was accompanied by taxi to Atos’s assessment centre in Vauxhall by a support worker from the South Kensington & Chelsea Community Mental health Team (CMHT). I needed someone to go with me as I was in a very bad state mentally. I frequently am, it’s my default setting, but the stress of the PIP assessment made me very ill.

Despite being psychotic I registered a number of things. The waiting area had around a dozen extremely nervous-looking people in it. A few had clearly been crying.

The building had extra wide doorways to accommodate people in wheelchairs. You could be thinking that it was good that they were at least making an effort until a woman was wheeled in with what was more of a bed than a wheelchair. She wasn’t wearing an oxygen mask, but her bed on wheels had an oxygen cylinder attached. I think everyone there thought the same thing. This woman clearly had very profound needs, why wasn’t her application approved simply on evidence from her doctors or why wasn’t she given a home visit? It must have cost some part of the NHS or social care system a small fortune to get her there that day.

I was called into an assessment room by a woman who introduced herself as a nurse. She started asking me questions that had been on the application form. I was quickly overwhelmed and wasn’t able to cope with questions being fired at me. At one point I started to read the answers from my application – this was cited in my award letter as evidence that I don’t have any communication problems. The support worker from my CMHT intervened to point out that I needed time and also that I regularly don’t make eye contact. Up to this point, the nurse appeared to believe that I wasn’t making eye contact out of rudeness.

More than ten minutes of the thirty-minute assessment was taken up with discussing that I had been in hospital over Christmas 2016 with a kidney injury. This had no relevance to my PIP application other than the injury may have been caused by the antipsychotic clozapine. Thinking about it later I got the impression that the nurse was happier talking about physical health and she was pleased with herself because she could pronounce “bilateral hydronephrosis”.

We reached a point where we were discussing my personal care and I pointed out that I hadn’t taken a shower in months (it was a bad patch, things are a bit better now). The nurse reacted strongly to this and said, “So how does your OCD affect you then”? She gave me a look as if to suggest I had been caught out lying, claiming to have OCD while making statements to the contrary. The CMHT’s support worker and I exchanged glances, both thinking that this nurse didn’t know very much about OCD. As you may well know, to have OCD you don’t have to be washing your hands a thousand times a day and cleaning lampshades with a wet wipe. My OCD takes the form of a ritual where I have to hold my fingertips together at many points throughout the day in the belief that this will prevent a nuclear war. These type of rituals and compulsive thoughts are fairly standard with OCD. You can discover this through a simple google search. It beggars belief that someone could be assessing a person’s mental needs under PIP when they are not familiar with even the most basic details of one of the most common mental illnesses.

Following the assessment, I obtained a copy of the assessor’s report. There are a long list of inaccuracies. There are some things I can’t see how she misunderstood and I concluded that she just made things up. For instance, I said at that time I was only able to go to a local cafe with the help of a support worker. The report said I went to a local cafe alone and cited this as a reason for me not requiring a higher level of support.

The worse inaccuracies are regarding my medication. The assessor’s report said I had no side-effects. Putting aside that we had just had a ten-minute discussion about how clozapine may have caused the kidney injury and put me in hospital for a week, I put on six stone while on antipsychotic and this almost certainly explains why I developed type 2 diabetes in my forties (since stopping antipsychotics I have lost a lot of weight). Even worse, the report doesn’t mention the chronic exhaustion I experience as a result of taking sodium valproate. It’s the bane of my life. Apart from the psychotic symptoms I experience it’s why it’s why I’m kept isolated in my flat so much of the time. These things are mentioned in my application and my social worker’s report but seem to have been cheerfully ignored.

The listing of my medication on the assessor’s report was completely wrong. It didn’t mention sodium valproate. Regarding antipsychotics, it didn’t mention that they don’t work for me and my consultant psychiatrist has concluded I have treatment-resistant psychosis. It mentioned that I am on an anti-depressant, but not that it may or may not be having an effect and that I’ve been on several which did nothing but produce side-effects. It’s important to stress that these are not just simple clerical errors, it illustrates a cavalier attitude to assessing someone’s health condition and the needs this may create. Would this be tolerated more widely in the NHS? How long would such a hapless nurse last on a hospital ward?

Before I received the assessor’s report I had received my PIP award letter from the Department of Work and Pensions (DWP). It mentioned a “mental state examination”. I initially assumed this referred to a mental state examination detailed in a letter from a psychiatrist within the CMHT and handed to the assessor. When I received the assessor’s report it was clear that Atos claim to be carrying out mental state examinations. I’ve been treated by mental health services since 1991, more regularly since 2002 and intensely since 2007. I’ve had many mental state examinations. During this Atos one none of the usual questions were asked. In terms of examining me, the nurse just occasionally glanced away from her computer screen. Had she undertaken a genuine mental state examination she would have found out that while sitting in front of her I was experiencing visual hallucinations, thought insertion (the belief that people are trying to insert thoughts into your head) and was deeply suicidal. The CMHT support worker was concerned enough to speak to my community psychiatric nurse (CPN) and my CPN was concerned enough to organise an emergency appointment with my consultant. Everyone involved could see I was in a disturbed state (and that includes the receptionist at the mental health centre and the taxi drivers who took me to and from the Atos building). The only person who didn’t notice my disturbed state was the Atos assessor who seemed to think I was fine apart from not making eye contact. Online I have read a great many scornful comments by service users and mental health professionals about Atos’s use of the term mental state examination.

I had an emergency appointment with my consultant the day of my PIP assessment. She noted that I’m one of the more seriously ill people being treated by the CMHT and that in the ten years I had been seeing her, which coincides with the time I had been receiving DLA, my mental health had deteriorated considerably. We had a discussion as to whether I should consider giving up my council flat and moving into supported accommodation. People normally hope to move the other way.

Quite a few weeks passed without me hearing from the DWP following my assessment. Eventually, a welfare rights advisor who is part of the CMHT phoned the DWP on my behalf and found that I had been granted PIP standard rate for daily living needs and nothing for mobility (I had previously been getting DLA middle rate care and lower rate mobility). The welfare advisor explained that it was more difficult to get the mobility element under PIP. He was pretty bullish about my chances of success if I appealed the care decision. I had eleven out of the twelve points needed for enhanced rate.

Maybe I have a strange sense of humour but I occasionally look at my PIP award letter to make myself laugh. It’s comedy gold. At the time I’m writing this I’m going out of my flat about twice a week. One afternoon I ‘ll try to do a week’s shopping at a supermarket and visit an art gallery (art galleries are my hobby). Maybe another afternoon I’ll go to local shops. I was better during the Summer and but seemed to have slipped back again. I’m not even seeing my CPN much at the moment as he is overwhelmed. Back when I had my PIP assessment I was going out very little and needed to get taxis everywhere. Other than trips to the mental health centre I only occasionally strayed more than a mile or so from where I live. I hadn’t left London in more than five years. I want to point out that I have only been abroad once (a day trip to Bologne when I was eighteen) and have never been on an airplane, I’m saying all this because if you read my PIP award letter you’d think I was an international playboy and jet-setter. There was a strenuous and determined effort to deny me the mobility component. There was also the suggestion that because I was going to the mental health centre a lot – several times a week at that point – I couldn’t really be that ill. It’s a bit like arguing that if someone is going through a particularly grueling regime of chemotherapy they don’t really have cancer.

In discussion with the CMHT, I decided to put in a mandatory reconsideration. My consultant sent a letter stressing the seriousness of my illness. The mandatory consideration rejection letter from the DWP said that the award of PIP didn’t depend on your illness, but your ability to do specific tasks. Why then does my initial award letter state, “I made my decision using information about your health condition or disability including details of any treatment, medication, test results and symptoms”? Why is Atos attempting to record peoples medication? Why the phony mental state examinations? In any case, as my consultant pointed out, these examinations are snapshots and not intended to establish long-term care needs.

The rejection letter again focused on my life as an international playboy but also introduced the idea that I’m a global financier. I had been asked during the Atos assessment whether I had a bank account. I replied that I have two accounts. Back in 2006, I was so broke I was reduced to counting out coins and taking them to the bank (this was back when you had to use plastic money bags before banks had coin counting machines). I was too ill to make it to my own bank branch so went to the nearest bank. They didn’t want to change the money but said I could open an account with them. I was bemoaning this to a friend who helps me out with money and other matters. He said having two bank accounts was a good thing. He reminded me that when I became ill in 2002 my account was shut down and for a number of years I didn’t have an account with any bank. So I opened an account. The fact that I have two accounts was used against me to say I don’t need help managing money and overall I’m not that ill. I do need help and am very ill but am being punished because I have friends who are financially literate.

The rejection letter also focused on the fact that I occasionally walked to the mental health centre, my GP’s etc. It seems ludicrous now but during the Atos assessment, I mentioned trying to walk places as an example of my trying to help myself and not just giving in to my illness. Between around March 2017 and September 2017, I was going out more but have now slipped back to not walking out and about much. Problem is since I now have less money under PIP than DLA I can’t afford taxis.

I decided not to go to appeal. I was simply too ill at the time. I’m not much better now. Had I appealed I would have had to wait somewhere between three months and one year, possibly longer. I manage to get by through not thinking about my ESA claim and pushing it to the back of my mind. I live in terror of being found fit for work-related activity let alone being found fit for work. I’d be sanctioned at the end of the first week. Although I was appealing for PIP I would have inevitably ended-up thinking about my ESA claim. This would trigger stress, a worsening of my psychotic and mood symptoms and an increase in my suicidal thinking. The mandatory consideration process has clearly been devised to deter people from appealing. It’s intended to make people give in.

We frequently hear about postcode lotteries for a variety of services. PIP and ESA are state-funded lucky dips. It appears that you are awarded benefits depending on the individual prejudices of the assessors (who the DWP invariably backup), who make decisions on a whim or whether they enjoyed their lunch that day. I think this explains the truly bizarre decisions that are reached by the DWP in making benefit awards now.

In theory, I should have no anxiety about my benefit claims. I have very high support needs due to severe chronic psychosis and mood symptoms. On paper, it looks like I should be getting the PIP enhanced rate daily living component and at least the standard mobility rate while remaining in the ESA support group. I’m a textbook care-in-the-community client. It has been decades since this idea came to prominence. PIP and ESA should be enabling independent living and should rightly be seen as a vehicle for keeping health and social care costs down ie. keeping me chugging along in the community is a lot less expensive than the cost of potential repeated hospital admissions.

Without PIP – without the funds to pay a number of people who help me live independently – the cost of my care would rise steeply. For all its imperfections, I am incredibly grateful to receive financial help to support me while I’m unable to work and to help me live independently. The problem is as the system is now operating it at times makes my illness worse.

In my room gallery

The council bedsit of a poor old schizo. Note that the iron and ironing board are even more decorative than the art posters, I haven’t used them in years. I know I look bookish, but this a collection of snot-covered paperbacks I bought from charity shops on the Kings Road during the three years I was living in local authority temporary accommodation in Chelsea.

Regrettably, where I spend most of my time

Degas & tube posters

Desk (obviously)

Coffee table next to bed

Schizo lolling about

Buddha – actually meant as a garden ornament

Che Guevara up close

Schizo on top of the wardrobe

Sunflowers poster

Reading in time for Remembrance Day

Books & clothes

Featured image: A photo of my room, taken with my iPhone, November 2017.

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This post has now been superseded by a more recent post detailing my submission to the Work & Pensions Committee inquiry: see In my room.

I’m leaving this post here so that you can learn about my pretentiousness and neophobia, while enjoying a gallery of poverty porn from the Parisian world of the fin de siècle.

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Parliament’s Work & Pensions Committee is undertaking an inquiry into Personal Independence Payment (PIP) and Employment & Support Allowance (ESA) assessments. Committee Chair, Frank Field MP, has said, “We would like to hear from claimants – and assessors – about whether and where the system works or is failing, and how it might be fixed”.

Of course, I see this as an opportunity for new heights of pretention. I thought I’d make a video to illustrate the fact that I need PIP as I spend 90% of my time in one room due to various symptoms (see Psychotic & proud).

The problem is, despite having my current iMac for eight years, I have never opened iMovie and don’t know where to start. Neophobia, same reason I have never tried sushi. I’m 52!

I have managed to choose some music for the soundtrack. When I overcome my timidity I’ll open iMovie. This will probably be at Christmas, but it’ll give me something to do while complaining that there’s nothing on the telly and I don’t know why I pay the license fee etc. This week I was reduced to watching one of the adult channels. No! I mean BBC4. It’ll be opera on Sky Arts next.

For now, you’ll have to settle for some poverty porn from the Parisian fin de siècle. These printmakers were at it long before Channel 5.

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Astounding though it may sound, I somehow managed to develop a successful career in charity fundraising while being unable to do simple arithmetic. I did European Social Fund (ESF) applications and large-scale lottery funding bids without being able to do simple sums. Colleagues thought I was making a joke when I said I couldn’t use Excel and instead relied on a £5 calculator and determination.

Having managed to complete the design of a website for a small charity, in the next month or so I’m hoping to start some voluntary fundraising work for a local carnival arts organisation. Taking into account the usual mental health considerations, the text should be a breeze. The figures will be a fucking nightmare.

As you may guess, the management of my personal finances isn’t too great. I sometimes see living on benefits as a blessing as I don’t have much money to think about. Problem is, every penny has to be micromanaged to achieve maximum effect. I have mini-budgets for everything – weekly groceries, utilities, occasional meals with friends, clothes, my tea fund for gallery cafes, multiple miscellaneous – and spend an inordinate amount of time calculating and recalculating. It’s a form of anxiety reduction and coping mechanism, digital worry beads.

When I’m at my most ill (see Psychotic & proud) I do none of this and I’m reliant on people to help me with even the most basic financial management – making sure the bills are paid and putting the correct amount of money in my wallet to spend each week. In theory, I’m supposed to receive a small extra amount of Personal Independence Payment (PIP) to help me with this but don’t seemingly because I have friends who are financially literate and we’ve reached the point in our society where if you have friends you don’t get help from the state.

This week I was frowning my way through a heavy session of constant recalculation when I just collapsed in frustration and gave up. Couldn’t for the life of me get the income and expenditure totals to add-up so asked a friend to see where I was going wrong. They took a quick look and said they didn’t tally because I had £70 surplus.

Pleasing news, an extra £70 (note this is on top of my contingency, what-if-it-all-fucks-up fund). What can I do with £70?

Sitting in the Victoria & Albert (V&A) cafe, doing what I always do which is to try and be invisible while uploading photos to Instagram that I probably shouldn’t have taken in the first place, I thought, Eureka! I’ll join the V&A.

I’m already a member of The National Gallery and The Tate Galleries so I may as well join the V&A. Of course, there will be people reading this who will be scandalized. People on benefits being able to afford to be members of galleries, does the Taxpayers’ Alliance know about this? When they’re not endlessly rewriting their CVs until their fingers bleed, shouldn’t they be idling in front of the telly watching Homes Under The Hammer, getting more tattoos, down the bookies or in Greggs eating a steak bake?

In my defense, I would point out that I don’t smoke or drink and subsist on the cheapest of everything – including laughs, obviously. My total gallery memberships work out at £3.75 per week. That’s less than I spend on a sandwich and coffee when I go on my near-weekly trips to the Mental Health Centre. I have been thinking of making my own sandwiches and taking a thermos flask. I wouldn’t look out of place with my packed lunch amongst all the other nut-jobs (I’m referring to the staff). With the money saved I could join The British Museum and The National Portrait Gallery.

Now I’m joining the V&A I will be able to fight for change from within. People who are aware of my Twitter oeuvre will know that I delight in mocking the V&A and others for their desire to cater to the Poppys & Millys insatiable appetite for yoga and intellectual disco. It’s my belief that if our great palaces of art want to increase their range of activities they should look to audiences beyond the Poppys. It’s not like there is a shortage of places in London for the Poppys and Millys to do yoga and intellectual disco.

The V&A could be laying on facilities for isolated pensioners to come in and do Tai Chi or they could be encouraging single moms from Barking & Dagenham council estates to bring in their tots to do gymnastics – what could be finer that tiny tumblers in the Raphael Room? The elderly and the very young could wander wide-eyed around galleries and then enjoy a relaxing cappuccino.

(Update 8 November 2017: the V&A are putting on Tia Chi in the Raphael Court! Hopefully they’ll bring in a broader audience and prove they are not such bastards after all).

The V&A will say they are diverse and will bang on about gal-dem. But gal-dem are sort of BAME Poppys & Millys (sorry, someone had to say it). It’s not like black working-class kids from the roughest estates in Tottenham and Hackney are not safe and at any moment the startled youths will be bundled into the back of a van by some Poppys and driven to the V&A and frog-marched around displays of art and design.

I launched a campaign on Twitter: Galleries for Sketching, not Stretching! I envisaged handing out leaflets at art venues like those prickly renegades The Stuckists.

My campaign didn’t snowball in quite the way I expected. In fact, the only person who was enthusiastic was some fellow who is into “men’s rights”. He complains bitterly that feminists are trying to stop men doing yoga. It’s very unfortunate.

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It’s unusual for me to attend art shows where you have to pay and book in advance. I don’t have the money and I can never be reasonably confident that I’ll be up to attending on the day. Basquiat’s Boom for Real may seem an odd choice for an uncool miserablist like myself (I’m an unlikely graffiti artist), but I have never been to the Barbican so I thought it would be a bit of a day out.

Note: There’s a Barbican photo gallery at the bottom of the page

I never find tube journeys easy. For a while, I was unable to get on a train other than on the District Line to High Street Kensington (for the Central Library). Those trains are spacious and not deep underground. The problem began after getting stuck in a tunnel on a Piccadilly Line train for almost an hour one swelting Summer’s day. Now I’m OK-ish if I get a seat and don’t make eye contact. It’s a relief if a young woman doesn’t offer me her seat. This has happened to me twice in the past few months. I get the message. Because of the chain-smoking and the prematurely grey hair I look old for my age. But I’m not THAT decrepit.

Had a bit of a mooch around the arts centre. Theatres, restaurants, galleries occupied by the usual types. Might have been a convention on for creative industry workers, university lecturers, and those fruity charity comms girls. But there plonked down amongst all the plushness was a bag lady. No, not some Daphne down on her luck, drowning her sorrows having made herself destitute helping her children through university and getting them on the property ladder, a proper bag lady. Several overcoats, a couple of dozen carrier bags, happily reliving aloud her fond memories: once was an art student, the first girl at college to wear a mini-skirt, exhibited all around Europe, caught gonorrhea in Venice. It’s always a joy to hear people talk aloud in public.

The Barbican is noted for its theatre. I’ve only been to the theatre once. A girlfriend took me to see a performance of The Slab Boys her flatmate was in. He kept forgetting his lines and saying “prompt”. I was so ignorant I thought it was part of the play. That’s probably a very state joke, but I’m so clueless about what happens on the stage I wouldn’t know.

After the performance, there was another performance. My girlfriend insisted that the theatre had more relevance to working-class lives than pop music. Superficially this seems absurd, but then who am I to say? I make jokes about not really liking music, but it’s not that far from the truth. When I was younger my musical tastes were always influenced by what music a girlfriend was listening to – along with interests in books and art. I could be described as a late developer when it comes to having an intellectual life. I split up with the theatre girl on the grounds of me being a philistine.

Basquiat, what can I say? Happily, I wasn’t the only unlikely graffiti artist at the exhibition. The usual grand old duchesses and dukes of the avant-garde were present, now in their 70s and 80s with their ripped jeans and bohemian hair. That said, it was very largely a young crowd. Few parents with nippers in pushchairs which is always a pleasure to see.

For those of you who don’t know, Basquiat was a graffiti/street artist from the late-70s and early-80s who became a pioneer in the 1980s downtown New York art scene. Precocious and self-taught, he played an important role in bringing graffiti art into the mainstream. He was establishing himself as a major contemporary painter when he died at 27 from a heroin and cocaine overdose.

Forty years ago in the emerging street culture of New York’s South Bronx, music and visual arts fusing must have seemed full of possibilities. Aunts and uncles dancing at the V&A these days doesn’t, especially given that there is no shortage of venues where they could be letting their hair down. And on Friday nights the Poppys and Millys have turned the once august institution that is the National Portrait Gallery into Faliraki.

The graffiti in the exhibition left me as puzzled as ever. I haven’t the faintest idea what distinguishes some scribble on a wall from street art: I’m probably being an elitist describing anything as scribble. That why I went, looking for clues. Here’s a clue, I’ve lived on 60s-built concrete estates smothered in graffiti. There was no graffiti anywhere around the Barbican estate amongst the polite signs to respect the residents and keep noise to a minimum. I don’t think graffiti survives very long around the Barbican.

I try to read as much poetry as I can, but I need a huge flashing neon sign to tell me if anything is any good. I noticed that Basquiat’s poetry was influenced by William Burroughs and that he performed with him.

I enjoyed the paintings. Even with my untrained eye, I could see the influences of and references back to Picasso. I liked the sheer elan of it all.

Not sure we’re supposed to shit ourselves in amazement that a street artist had heard of Leonardo da Vinci. Basquiat’s mother took him around galleries as a kid. It’s worth noting that while Basquiat didn’t go to art school he wasn’t exactly from the ghetto. He had a comfortable middle-class upbringing.

I think the curators may have been overselling some points. The guy was interested in ancient Eygpt. That didn’t make him an Egyptologist. I’m not sure Basquiat was over-reaching himself, but his boosters appear to be stretching it.

I have been a rough sleeper and have an impressive homelessness portfolio including Soho streets, hostels, squats/derelict buildings, local authority temporary accommodation etc.

I have one O level (Geography).

I fancy myself as a bit of an autodidact. More Ernest Hemingway/Frida Kahlo than Adolf Hitler.

I have been a voluntary sector playboy, writing fundraising applications for small charities and community groups and undertaking web design. I now do occasional voluntary work when mental health permits.

I write about mental health, assorted arts wankery and life as one of the abandoned. I try to get my facts straight. I’m not making any promises about the grammar.

Please note I’m going to punch the next person on Twitter who calls me a hipster: apart from being 52 (!) I have a proud industrial working-class heritage. One of my favourite accounts on Instagram is blackcountrytype.